As some of you know, I have a lesion on my midbrain that is inflamed and causing major coordination, balance, hearing, and vision issues. I have seen multiple neurologists, a neurosurgeon, and visited Sanoviv in Mexico where I received a lumbar puncture, among other things.

My main neurologist believes this is due to Lyme and/or coinfections. However, the neurosurgeon and the doctor at Sanoviv believe it's not from Lyme or the coinfections. The main reason they don't believe it is Lyme is because there are no infectious markers in my spinal fluid. But, the thing is, all my symptoms, except for the migraines, started up after the tick bite. But, the migraines took a massive jump in frequency after the tick bite. The only markers they were able to find in the spinal fluid were inflammation markers. Everything else looked good.

The neurosurgeon said that he could not tell what the lesion was, but was certain it was benign due to the lumbar punch results and comparing an MRI taken last August to one I had a couple weeks ago. He said that hopefully the inflammation will eventually go down and I can regain my coordination and such. But, at this point he strongly discouraged surgery to remove it. It is in such a place where it would most likely cause more damage than I already have if he were to operate.

So, my question..... Could it still be Lyme and/or coinfections with the absence of any infectious markers in my spinal fluid?

Girlie said...Hoagie, so you said the Neurologist says the lesion is from Lyme...and your LLMD - he also says Lyme?If that's a yes...Id go with them.

The fact that the neurosurgeon is using the spinal tap not showing Lyme to come to this conclusion is suspect.

Spinal taps are not worthy...they aren't accurate and aren't even recommended to use to test for Lyme.

Did you have an Igenex WB done? What were results?

I just started seeing a new LLMD. He is not yet sure either. But I have only had tthe initial consult with him. He is waiting for the results of the 40 plus vials of blood I gave last week to come in. 40 plus! Dude is thorough.

It's not because they didn't find Lyme in the fluid. It's because there were no markers indicating an infection of any sort. Just markers indicating inflammation. So their thinking is that if there were any coinfections or spirochetes causing the inflammation that there would be some markers such as elevated protein levels and such. But, my neurologist thinks it's possible for lyme to still be the culprit.

I'm split. If it's being caused by lyme/coinfections, I will need iv treatment. But the thing is, we aren't sure. Stinky situation.

I have had two tests done. Neither through Igenex. First test came back with 3 IGG bands positive and 1 IGM positive, and Mycoplasma only coinfection. Second test which I had done in December came back 1 IGG band positive for Lyme, no IGM. And IGG positive for Babesia, Bartonella, and Ehrlichiosis. I believe the Babs protocol Dr J put me on in November woke up the Babs cause that was the highest positive of all the coinfections.

I just started seeing a new LLMD. He is not yet sure either. But I have only had tthe initial consult with him. He is waiting for the results of the 40 plus vials of blood I gave last week to come in. 40 plus! Dude is thorough.

It's not because they didn't find Lyme in the fluid. It's because there were no markers indicating an infection of any sort. Just markers indicating inflammation. So their thinking is that if there were any coinfections or spirochetes causing the inflammation that there would be some markers such as elevated protein levels and such. But, my neurologist thinks it's possible for lyme to still be the culprit.

I'm split. If it's being caused by lyme/coinfections, I will need iv treatment. But the thing is, we aren't sure. Stinky situation.

I have had two tests done. Neither through Igenex. First test came back with 3 IGG bands positive and 1 IGM positive, and Mycoplasma only coinfection. Second test which I had done in December came back 1 IGG band positive for Lyme, no IGM. And IGG positive for Babesia, Bartonella, and Ehrlichiosis. I believe the Babs protocol Dr J put me on in November woke up the Babs cause that was the highest positive of all the coinfections.

I wouldn't use the spinal tap info to make the decision. i didn't have any markers in inflammation in my blood...or anything suspect...although I did not have a spinal tap.

What were the three bands? Lyme specific ones?

What did Dr J say about the lesion? Lyme? Or was the lesion found after you saw Dr J? (Sorry - can't remember timeline - just remember he recommended IV abx)

I just started seeing a new LLMD. He is not yet sure either. But I have only had tthe initial consult with him. He is waiting for the results of the 40 plus vials of blood I gave last week to come in. 40 plus! Dude is thorough.

It's not because they didn't find Lyme in the fluid. It's because there were no markers indicating an infection of any sort. Just markers indicating inflammation. So their thinking is that if there were any coinfections or spirochetes causing the inflammation that there would be some markers such as elevated protein levels and such. But, my neurologist thinks it's possible for lyme to still be the culprit.

I'm split. If it's being caused by lyme/coinfections, I will need iv treatment. But the thing is, we aren't sure. Stinky situation.

I have had two tests done. Neither through Igenex. First test came back with 3 IGG bands positive and 1 IGM positive, and Mycoplasma only coinfection. Second test which I had done in December came back 1 IGG band positive for Lyme, no IGM. And IGG positive for Babesia, Bartonella, and Ehrlichiosis. I believe the Babs protocol Dr J put me on in November woke up the Babs cause that was the highest positive of all the coinfections.

I wouldn't use the spinal tap info to make the decision. i didn't have any markers in inflammation in my blood...or anything suspect...although I did not have a spinal tap.

What were the three bands? Lyme specific ones?

What did Dr J say about the lesion? Lyme? Or was the lesion found after you saw Dr J? (Sorry - can't remember timeline - just remember he recommended IV abx)

So are you questioning Lyme? Or just wondering if the Lyme and co's caused the lesion?The bands were Lyme specific.

The July 2017 test came back positive IGG bands 23, 41, 66 and IGM 41. My most recent test came back only IGG 66 positive. However, it was the most recent test that had positive IGG Babs, Bart, and Ehrlichiosis.

Dr J attributed the swelling of the lesion to Lyme and Co. However, I had not had a spinal yet.

I'm not questioning Lyme and co. I know i have it. What I am questioning is if the lesion and the inflammation in from Lyme and co. If it is something else, then oral abx should be fine for treating my Lyme infections I'm assuming. But, if it is from Lyme, I need IV.

The thing is, I was having some weird issues already before the tick bite. Nothing too major. Chronic, very occasional ocular migraines and calf fasciculations. But, since the tick bite, the migraines took off and the fasciculations have gone insane, not to mention all my new symptoms.

I have a theory that I may have had this midbrain lesion for a very long time. The Lyme and co have irritated it making it swell... But, where I'm stumped is there should be some signs of infection in my spinal fluid. Not necessarily Lyme specific infections, just some type of indicator. I'll go over it next month with my LLMD.

I have read mixed reviews about my new LLMD's practice. I have been twice. And so far I am thoroughly impressed. He has me coming in weekly until my follow up visit. I am going in for nutrient IV infusions and what he calls "Brain Detox" IV infusions. He puts a strong emphasis on overall nutrition. His clinic has a Quest lab inside it and a supplement shop right next door that carries all his recommended supplements and herbs, which, most of the time they sell cheaper than you can find elsewhere. A big plus is that he is only 90 minutes away. Dr P used to work side by side with Dr J and they still correspond on a somewhat regular basis.

During an extremely traumatic hospital for Kid#1 several years back, they wanted to do a spinal tap for lyme (we believe he had lyme, they did not...). However, I would not consent because we already had tests to show he had lyme, and I knew spinal taps are not good tests for lyme/etc. We did want to do a MRI (per our regular doctors recommendations), but the hospital refused and said they would only do both - not just a MRI (I kid you not - this is how ridiculous they were!). In the end, they discharged him worse than when he came in and had no good ideas of what was wrong with him (plus they missed a serious medication reaction that we had to discontinue immediately upon home because he would fall when he tried to walk...).Anyways, it's a really long story. But none of them would believe that he had lyme disease because "their" tests didn't show it and they absolutely would not listen to us or look at any of the other document/labs we brought in.

Fast forward years later - I treated him for lyme/coinfections/etc disesase, and he has now be healthy for nearly a year. I wish I could see all those doctors back from that hospital stay. I would have some really choice words for them.

No, I would not rely on a spinal tap.And no - my kid's inflammation markers were all "normal" too.

Have you looked into HBOT for inflammation? Have you read the Oxygen Revolution book? They have really inspirational of before/after SPECT exams of the brain healing after being treated for HBOT. I'm not sure how this would relate exactly for your lesion, but I do know hbot is really effective for inflammation. Especially the brain (see the SPECT exam pictures - it is truly remarkable!).

For Kid#1, hbot was an extremely essential part of his healing. It resolved one of his last, and more serious, symptoms that I could not resolve. For him, it was extremely valuable.

I did post about you on the other thread asking for an update few times, but I didn't see a reply. I am really glad you posted. Have been thinking of you! Truly wishing you the best, Hoagie!Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!Kid#2: Still sick now despite being treated for years but doing better (not well yet).Kid#3: Generally good but relapsing off/on. Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)Treating with herbals now.

The July 2017 test came back positive IGG bands 23, 41, 66 and IGM 41. My most recent test came back only IGG 66 positive. However, it was the most recent test that had positive IGG Babs, Bart, and Ehrlichiosis.

Dr J attributed the swelling of the lesion to Lyme and Co. However, I had not had a spinal yet.

I'm not questioning Lyme and co. I know i have it. What I am questioning is if the lesion and the inflammation in from Lyme and co. If it is something else, then oral abx should be fine for treating my Lyme infections I'm assuming. But, if it is from Lyme, I need IV.

The thing is, I was having some weird issues already before the tick bite. Nothing too major. Chronic, very occasional ocular migraines and calf fasciculations. But, since the tick bite, the migraines took off and the fasciculations have gone insane, not to mention all my new symptoms.

I have a theory that I may have had this midbrain lesion for a very long time. The Lyme and co have irritated it making it swell... But, where I'm stumped is there should be some signs of infection in my spinal fluid. Not necessarily Lyme specific infections, just some type of indicator. I'll go over it next month with my LLMD.

I have read mixed reviews about my new LLMD's practice. I have been twice. And so far I am thoroughly impressed. He has me coming in weekly until my follow up visit. I am going in for nutrient IV infusions and what he calls "Brain Detox" IV infusions. He puts a strong emphasis on overall nutrition. His clinic has a Quest lab inside it and a supplement shop right next door that carries all his recommended supplements and herbs, which, most of the time they sell cheaper than you can find elsewhere. A big plus is that he is only 90 minutes away. Dr P used to work side by side with Dr J and they still correspond on a somewhat regular basis.

Okay - you aren't questioning lyme...just wondering if this lesion - is separate...

Re: the signs of infection in the spinal fluid...not sure, but if it can evade detection in the blood, i would think the same would be true in the CSF.

You do have lyme - by your test results...so not sure that a negative lumbar puncture rules out that your lesion comes from something other than lyme.

1000Daisies said...During an extremely traumatic hospital for Kid#1 several years back, they wanted to do a spinal tap for lyme (we believe he had lyme, they did not...). However, I would not consent because we already had tests to show he had lyme, and I knew spinal taps are not good tests for lyme/etc. We did want to do a MRI (per our regular doctors recommendations), but the hospital refused and said they would only do both - not just a MRI (I kid you not - this is how ridiculous they were!). In the end, they discharged him worse than when he came in and had no good ideas of what was wrong with him (plus they missed a serious medication reaction that we had to discontinue immediately upon home because he would fall when he tried to walk...).Anyways, it's a really long story. But none of them would believe that he had lyme disease because "their" tests didn't show it and they absolutely would not listen to us or look at any of the other document/labs we brought in.

Fast forward years later - I treated him for lyme/coinfections/etc disesase, and he has now be healthy for nearly a year. I wish I could see all those doctors back from that hospital stay. I would have some really choice words for them.

No, I would not rely on a spinal tap.And no - my kid's inflammation markers were all "normal" too.

Have you looked into HBOT for inflammation? Have you read the Oxygen Revolution book? They have really inspirational of before/after SPECT exams of the brain healing after being treated for HBOT. I'm not sure how this would relate exactly for your lesion, but I do know hbot is really effective for inflammation. Especially the brain (see the SPECT exam pictures - it is truly remarkable!).

For Kid#1, hbot was an extremely essential part of his healing. It resolved one of his last, and more serious, symptoms that I could not resolve. For him, it was extremely valuable.

I did post about you on the other thread asking for an update few times, but I didn't see a reply. I am really glad you posted. Have been thinking of you! Truly wishing you the best, Hoagie!

Sorry to hear about the rough time your child had. But, I am glad to hear that the HBOT helped out. I have been looking at that as an option.

I am showing inflammation markers, by no infectious markers. It would be too much of a coincidence if it wasn't Lyme, though. So, I am just going to treat it as if it is Lyme and hope for the best.

Thank you for your concern. And sorry I did not follow up on the other thread. It's been so hectic around here and my brain is definitely not operating at full speed.

The July 2017 test came back positive IGG bands 23, 41, 66 and IGM 41. My most recent test came back only IGG 66 positive. However, it was the most recent test that had positive IGG Babs, Bart, and Ehrlichiosis.

Dr J attributed the swelling of the lesion to Lyme and Co. However, I had not had a spinal yet.

I'm not questioning Lyme and co. I know i have it. What I am questioning is if the lesion and the inflammation in from Lyme and co. If it is something else, then oral abx should be fine for treating my Lyme infections I'm assuming. But, if it is from Lyme, I need IV.

The thing is, I was having some weird issues already before the tick bite. Nothing too major. Chronic, very occasional ocular migraines and calf fasciculations. But, since the tick bite, the migraines took off and the fasciculations have gone insane, not to mention all my new symptoms.

I have a theory that I may have had this midbrain lesion for a very long time. The Lyme and co have irritated it making it swell... But, where I'm stumped is there should be some signs of infection in my spinal fluid. Not necessarily Lyme specific infections, just some type of indicator. I'll go over it next month with my LLMD.

I have read mixed reviews about my new LLMD's practice. I have been twice. And so far I am thoroughly impressed. He has me coming in weekly until my follow up visit. I am going in for nutrient IV infusions and what he calls "Brain Detox" IV infusions. He puts a strong emphasis on overall nutrition. His clinic has a Quest lab inside it and a supplement shop right next door that carries all his recommended supplements and herbs, which, most of the time they sell cheaper than you can find elsewhere. A big plus is that he is only 90 minutes away. Dr P used to work side by side with Dr J and they still correspond on a somewhat regular basis.

Okay - you aren't questioning lyme...just wondering if this lesion - is separate...

Re: the signs of infection in the spinal fluid...not sure, but if it can evade detection in the blood, i would think the same would be true in the CSF.

You do have lyme - by your test results...so not sure that a negative lumbar puncture rules out that your lesion comes from something other than lyme.

Glad that you have a good LLMD, Hoagie.Good point about the elusive Lyme...

BTW, your DC trip is coming up soon, right? I'm excited for you. I wish you the best while you are there.

BTW, your DC trip is coming up soon, right? I'm excited for you. I wish you the best while you are there.

Thanks, Hoagie.

Yes, it is. I'm having a bit of frustration with the office today.I've read that can happen...

They emailed me saying they have called me and want to confirm my appt that's in a few days.

I didn't get a call from them.

They also said they need my intake forms. I did email them several days ago. It took me 3 hours to fill them out. So, I resent them today.

So, now I've called them back and left a message...a few hours ago...and no return call yet. So, now I'm carrying my phone around with me - so I don't miss a call.They don't want more than one message left on their machine.

I hope they don't cancel my appt. sheesh.

I have been feeling horrible the past week...so traveling will not be fun. I want to be excited about the trip ...but having difficulty with that.Three flights to get there...the longest one being 4 1/2 hours....with a disgruntled hubby who has to squeeze his (just under 6'3" ) body into a sardine can - sitting next to me.Moderator, Lyme ForumSymp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov./15 mino - to biaxi